90 days post Lemtrada. The body feels ahead of the mind

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3 months post-Lemtrada. Another “man-made” line in the sand – but significant because I’d always steeled myself for (what I’d been told) would be ~90 days of physical depletion after my treatment.

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It was mid-February last year when I had last walked painlessly and freely. At my worst, I could barely walk at all; at my best, there was a mechanical clunkiness that I struggled to articulate: the awareness that something felt a bit wrong… stiff, wobbling and robotic; with an ever-present undercurrent of pins and needles.

Then, last Sunday, as my boys ran (pretty aimlessly!) around a rugby field, it dawned on me that some sort of spring had returned to my step. I equate the sensation with the looseness brought on by a particularly successful physio-visit or yoga session. I don’t know when exactly it happened… but I had to consciously search to find only the smallest hint of pins and needles. I found that I could “stride” again rather than just shuffle.

And I’ve been back on my bike. I’ve been back, riding with friends, who I can (just about!) keep up with – thinking how much fun all this is, and how much I’d miss it if it went away. The body is creaking as I remind it what cycling is about: aches here and there; my old arthritic knee; troublesome sciatica; and no “kick” in my legs – but these are obstacles I understand and have been long frustrated by. Although there’s no short-cut around them, they do not carry with them the more sinister, hidden, threat of MS.

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Getting back into my cycling isn’t proving that easy. Nor, perhaps, should it be. I’ve “bonked” a few times already (the term cyclist’s use to describe that unwanted sensation when suddenly the body can cycle no more – an absolute crash in energy levels that is near-insurmountable); and have returned from shorter rides disconcerting late due to my average speed. Even my commute home is taking noticeably longer than I remember. But I do want to get back to being ‘capable’ and free. I don’t want to get used to a new norm.

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In the book, “Life of Pi”, ‘Pi’ describes his family’s experiences of owning an Indian zoo in the seventies. On the rare occasion that an animal would escape its captivity, the most common result was not that the animal would run amok; nor make a bee-line for the freedoms of the wilderness; instead, after a few tentative circles of new territory, it would typically return to its cage, where it felt safe, in familiar surrounds, and would await its next meal.

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My latest worry is about the ‘fogginess’ of mind that I’ve been experiencing the last few weeks. I gather that this is not unfamiliar post-Lemtrada, so I keep my fingers crossed that it will pass. At the moment, I can still see the funny side: discussing deadlines with a colleague, I spent at least 5 minutes thinking that we were already in March; I enjoyed a dinner party with my wife, but realised afterwards that I couldn’t remember a single person’s name round the table; and I have been forgetting not only names of prominent celebrities and actors, but of old friends too (let alone the names of their children or partners). Maybe this is all just me growing old… maybe not. I do see on the internet that many people in my position have similar concerns, but, coupled with the occasional bout of disabling vertigo, I wonder how much longer I can retain the mask of competent employee…

<<always remember not to let MS be your excuse for everything. It is no less “you” than the scar on your cheek, colour of your hair or love for your children>>

 

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